TCB, I also got caught when Dr. Aradillos left Drexel and went to Vincera Institute. As soon as I was able to make an appointment to see him at Vincera I was able to see him in Dec 2016. When I saw him, we decided to change our treatment strategy and not do platelet plasmapheresis, for a variety of reasons. I have been reluctant to have a small fiber nerve biopsy because every time I'm poked, even for an IV for my infusions now, I get discoloration in the limb. Small sores I get on my feet take forever to heal. However, after my last visit and saw his new PA (Lynn has left) I will have the SFN biopsy on my next visit to Vincera.
Last year I did a 5-day inpatient Lidocaine infusion followed by 5-day inpatient Ketamine. I did the booster protocol and still receive both Lidocaine and Ketamine, on an outpatient basis, every 8 weeks. The lidocaine infusion did wonders for my bladder and hand spasms. The ketamine helped with the pain and muscle spasms. My pain is much better controlled since my inpatient and the frequent outpatient infusions.
If you are interested in speaking with someone who does platelet plasmapheresis for SFN I have a friend with CRPS/SFN who also sees Dr. Aradillos who has this done just PM me.
I've been very impressed with Dr. Aradillos. At my visit in Dec 2016 he was concerned that I had yet to be found structural damage in my pelvis from my hysterectomy and bladder sling. I saw the surgeon Dr. Poor who knew right away. After a specialized MRI they found I have athletica publagia, parts of the adductor muscles of the legs and rectus abdominus muscles had been torn off the pubic bone, plus chronic changes to the pubic bone from unevening loading over the last 9 years. Needless to say I was thankful for the diagnosis since I've had a triad of symptoms that I've complained to every doctor I had seen but took 9 years for the diagnosis. Due to all the years that had passed the surgeon and I were on the same page that surgery was probably not a good options because the muscles could be too retracted after all these years to re-attach to the pubic bone. Dr. Dellon was the only doctor who came even close to thinking this was one of my problems.
The other thing that was found on the MRI was a pudendal neuroma at the right ischial spine. Potentially, it could also be a lump of scar tissue or neurowrap but the radiologist thought from looking at it that it is most likely a neuroma. Explains why I still complain that sitting on my right side is still painful, radiates into my leg and groin. I'm taking an alternative avenue, started going to the Functional Medicine Center at the Cleveland Clinic. One of my goals is to see if we can get my CRPS settle down enough that I can have surgery to have the neuroma removed. At the moment the risk to reward to have the neuroma removed is just not there.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner